August 11 Gary took his first dose of Methotrexate. 2.5mg. Who would have thought such a tiny pill could have possible healing properties? We didn’t notice anything at first; however, by the week of Aug. 23rd the first unfriendly side effect was kicking in. Agitation. Gary was feeling tense and it didn’t take much to upset him. He called it feeling “crunchy”. (So love his descriptions and choice of words!) It took us awhile to figure out it was the Methotrexate. He began to take CBD with Ashwagandha from Irwin Naturals. It helped to calm his nerves. Within a few weeks, he stopped taking the CBD with Ashwagandha and has been doing better. I’ve always said with every negative we can find a positive. The positive here? The Methotrexate was definitely getting into his system. Recent blood work was great, so his neuromuscular doctor has increased the medication to 15mg. He took his first dose of that yesterday. Now we wait to see what we know will be wonderful results. 🙂
We thought this new drug was causing weight gain as his weight suddenly shot up over 5 pounds. A trip to his cardiologist let us know it was actually his heart. Anytime you gain sudden weight it is typically fluid. Now we know what to watch for. An extra dose of Bumetanide has been ordered. Fingers crossed we will see the fluid retention get better. Unfortunately that means I may have to set his home office up next to the restroom! HA!
He is in his electric wheelchair most of the time now when out and about. He absolutely loves the independence. I’m sure people in Kroger were wondering about the man in his fancy red ride, zooming down the aisles with a big smile on his face! Not sure how many times I heard, “Hey, Creigh…watch this!” Holding my breath and fighting the urge to cover my eyes I would watch my wonderful husband zoom down another aisle grabbing groceries along the way. ❤ We bought a wheelchair ramp that hooks into the receiver hitch of his truck. It didn’t take long to discover this particular one wouldn’t work. It still required Gary to unhook, lower, remove chair, and raise the rail back up. This would not work if he was alone which was the whole purpose. The search is on for another one which will allow him more independence.
Current symptoms: increased muscle fatigue especially in the legs and arms, general tiredness, double vision and his right eye closes by the end of the day. While we would prefer to not have these, we praise God he doesn’t have the difficulty swallowing or Elmer Fudd voice as he did in the beginning! See? There is always positive thanks to faith! 🙂
Medications for MG: Still taking the 30/40 of Prednisone, 15mg Methotrexate, Vyvgart, and Pyridostigmine.
We finally made it up to the lake. There was a nice, cool breeze which we so enjoyed. It’s always nice to get away from the craziness of the world even if for a short weekend. 🙂
Life continues one day at a time. He still continues to work and loves it. When you ask him how he is, he ALWAYS says, compared to what others are going through…
I am blessed
i am blessed 
it’s good to hear that Methotrexate is helping. Hopefully it own’t knock his immune system totally off like it did mine after a year of taking it for mid-diagnosed rheumatoid arthritis. It took me about 2-3 years of taking Chinese meds from my acupuncturist to finally get mine back up to normal. That’s certainly something he doesn’t need!
Good to hear y’all were able to make it to the lake. We don’t have nearly as much going on as y’all and still haven’t been able to get to the coast. Hopefully one day soon!
Y’all take care and thanks for the updates. He is one lucky guy to have you!! Love to all💕
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